Ankylosing Spondylitis: Chronic Pain and Chronic Fatigue

By thrashery

2 min read

I had a few symptoms before I even knew I had AS. All these things that led up to where I currently am, doctors not knowing for the longest time, and not enough testing being done (just baffles me).

Shifting weight and back problems

Looking back (approx. 9 years ago) I was having trouble with plantar fasciitis as I gained weight and I had back pain early in the morning. I figured if I lost the weight I gained it would help. I lost the weight and the symptoms went away.

I was very athletic growing up, played sports, and never had problems so I picked up running again. Now, I was running 8-10 miles each day, but then my knees started hurting (doc said I had meniscus tears) which were painful! I slowly gave up running and then gained weight from new meds my doc prescribed. I was back at having back pain, but it got worse.

Chronic fatigue

It eventually lead to POTS and I was finally diagnosed August 2019 (9 years later). I'm in constant pain (my entire body), super tired, and I get terrible headaches. I want to lose weight because I want to see if it will help again, but I'm forever tired and just want to rest/sleep.

I just hope to overcome this and try something like Humira to see if it would help me. The most scary part of AS is coming down with POTS (caused by AS). It makes you dizzy, faint, gives you tachycardia, and causes nausea. My doc prescribed me some meds, so it has been helping in the meantime.

Hoping for a cure

I wish so badly for a cute. This disease has tested my faith several times. It had lead me to think horrible thoughts about wanting to die, it was that bad and writing about it makes me cry. Knowing that it got that bad several months ago is just so surreal.

Now, I find strength in my family, friends, and my faith. Those who are also suffering, you're not alone. I've been labeled a hypochondriac before I was diagnosed, or basically crazy because it was all in my head. Many people seem to not understand invisible disability and chronic diseases, which frustrates me. I could go on and on.... I wish everyone well, keep fighting.

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CommunityMember90868b Member
It's all so frustrating. Some people close to me get it. But others just don't. You u fortunately need to make your plans depending on what evil plan your AS has for you that day. I work out in the pool, go to PT, take my biologic and methotrexate faithfully. But symptoms still persist.. What I hate the most is the brain fog. People ask what's wrong with you. Did you over medicate. They just do not get it. This is the part I find most limiting. I used to be a hotelier, my day was filled with multi tasking. Lucky if I can finish 1 task on a fog filled day. It cuts into your confidence and your relationships. And forget about planning a nighttime activity. I can handle the pain with my physical therapy. But this other part drains my soul 
1. Doreen H Community Admin
 <inline-mention username="CommunityMember90868b" user-id="2107205"/>, We hear you, brain fog is definitely one of the more annoying symptoms of AS. You are certainly not alone. A few of our Patient Leaders have shared their experiences and managing brain fog and we are including a few here: <a href='https://axialspondyloarthritis.net/living/brain-fog-impact' target='_blank'>https://axialspondyloarthritis.net/living/brain-fog-impact</a> and <a href='https://axialspondyloarthritis.net/living/combat-brain-fog' target='_blank'>https://axialspondyloarthritis.net/living/combat-brain-fog</a>. Sending tons of positive thoughts your way, Doreen (Team Member)
anthony.carrone Community Admin
Hi @thrashery, Thanks for sharing your story here! It's an honor to have you in the community. I love hearing that you have your family, friends, and faith to help find your strength! Those three F's are so important in maintaining your mental health. Thank you for offering your support to the community. I hope you know we are always here for you as well! You're not alone 😀 Sending my best, Anthony (Team Member)